Last week we had the first two doctor visits since receiving the SMA diagnosis. First was the pulmonologist. Pulmonologists specialize in the treatment of lung diseases. SMA patients have many complications due to the atrophy of muscle that allows them to breathe. Visiting a pulmonologist is vitally important to keeping him alive. We met with a doctor two hours away. The appointment was a little disappointing for me. The doctor was not even aware of Alexander’s diagnosis, and thus I feel was not prepared for the appointment. The visit was very brief and we were basically told that we need to be discussing the decisions we will need to be making for Alex. Things such as a trach, ventilators and g-tubes. He said that he wants to do what we decide and would like for us to be proactive in his treatment instead of reactive. I feel like these topics should have been discussed and explained in more detail than they were. I have so many questions. I am hopeful the next appointment with him will be more informative. He did start the process of ordering home health aids for us, things like suctioning, shaky vest and a pulse ox. This appointment was a learning experience for me. It taught me that I need to be over prepared for each specialist visit. I need to go into each visit with as much knowledge as I can, and let them fill in the rest. I will have many questions already prepared before I go.
On Wednesday, we had an appointment with the neurologist.